Sunday, 6 February 2011

Sally's Syndrome exists !

No, not a weird sea creature, but the canals and labyrinths of the inner ear, showing Sally's Syndrome, except I will never get to call it that, as it has been named already, but only as recently as 1998, first described by Dr Lloyd B Minor of John Hopkins University, Baltimore, USA.

Found by me after an incubation period of only one month, since my writing on 6 January 'In the Days Before We Knew ...', (click on post title on right hand side) when I bemoaned the fact that many crips have their own peculiar impairments and symptoms, unknown to the medics or anyone else. Writing that blog page must have set in motion some percolation of information through the universe, such that I have found a clinical description of one of my weirdest symptoms, which will profoundly alter the care I get from the medical profession, and support my care and occupational therapy assessments by social services.

Fanfare of trumpets, whoops of joy, general throwing of hats into the air ...

Superior Canal Dehiscence Syndrome with Autophony and Tullio's Phenomenon.

Thanks to The Meniere's Society's publication SPIN
Edition No. 70 Winter 2009 page 5 ~ Systemic Lupus as a known cause of Meniere's Syndrome
Edition No. 72 Summer 2010 page 14 ~ Tullio's Phenomenon
and also
Wikipedia page on Superior Canal Dehiscence Syndrome modified 8 January 2011
and also the Diagram of Superior Canal Dehiscence with Tullio, or alternatively, with Autophony, (I think I have both !) which with Adobe Flash Player turns into lovely coloured moving pictures, courtesy of Google Images at Delaware Biotechnology Institute, Michael Teizido MD.
(No, again, I cannot get that link to work.)

It has taken me four days to bring together all the various sources of information, dating from the Osteopath's description in 1993, through ENT, Rheumatology and Osteopathy investigations and consultations, and collate them into a coherent description of my symptom history.

None of this would have been possible, but for the three monthly treatment with 120mg of DepoMedrone pinged into my butt from a huge needle a week ago by the Rheumatologist. Within seven to ten days, it clears my brain fog, returns suppleness to my hands, and gives me the physical capacity to sift through documents, the cognitive capacity to read them, then the energy to sit upright at my desk and type it all up.

So I have written to my General Practitioner (GP), my Rheumatologist, my Doctor of Osteopathy, my social worker and my Occuptional Therapist, with eleven pages of supporting documentation, and closed with these remarks:

It is important and necessary to my well being that these symptoms are diagnosed and named. This is in order that I have the various diagnoses in writing for evidence for the many times I have to prove my disabilities for state benefit and grant purposes and investigations, to social services (DCC Adult and Community Services) and various other agencies and charities. State benefits and grants provide for my home, my wheelchairs and my wheelchair accessible vehicle. Social services support is essential for my day to day living.

I think my GP will be the lead in progressing this, and when I see her next week I will ask for a referral to an Otolaryngologist.

Progress !



Blogger Jane said...

Hello Sally. Came to your site via a circuitous route and stayed to read some of your interesting writings - which then sent me off to read about SCDS (terminally curious ex osteopath here!)Wanted to leave an address to a support group for SCDS, although you might have it already.. I do hope that you will now be able to get much greater help with this horrible thing. Have signed the petition re DLA of course! Take care. Jane M

Monday, 7 February 2011 at 23:50:00 GMT  
Blogger Sally said...

Thank you Jane ... so sorry to have delayed publishing your comment ... health related stuff intervened.
I had just found the USA based support group for SCDS and interesting reading it was too !

Friday, 25 February 2011 at 17:58:00 GMT  

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